Feeling Cold with RA : Hi , I've been diagnosed with... - NRAS

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Feeling Cold with RA

lm2263456 profile image
26 Replies

Hi , I've been diagnosed with RA for about 6 years now, started with Metho and Enbrel,but currently just on Enbrel as we are trying to get pregnant. I'm wondering if anyone ever feels cold? Everyone I've asked says I feel normal but I am so cold sometimes I can't stand it. It actually hurts. The only way I've found to get warm is to get in a really hot tub. Does anyone have anything similar?

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26 Replies
Nettac profile image
Nettac

I often experience the reverse...I feel way too hot. This in itself is weird. Because my temperature is always quite low!

I think folks with autoimmune issues often seem to have trouble regulating body temp. I often wake in a cold sweat too.

I must say...I do love my hot blanket though, on days when I do feel chilled.

Yes definitely but no idea why RA should have this effect. Perhaps someone else will.

kbspots profile image
kbspots in reply to

Might be low iron in the blood or microvascular disease associated with the rheumatic diseases.

Because of my rheumatoid arthritis, I developed secondary Raynauds. I was constantly cold and even saw my fingers turn blue just from waving my hands. Being in air conditioning was painful. Have you been checked for this?

Junebee profile image
Junebee

I too have got Raynauds and my body thermostat goes haywire I can be frozen on a hot day i also now have fibromyalgia Don’t you just love this rheumatoid arthritis

oldtimer profile image
oldtimer

I am normally far too hot but last week suddenly had the opposite and was sitting clutching a hot water bottle and wrapping myself in a fleece blanket. Then just as suddenly it switched back to hot. Weird.

popsmith1874 profile image
popsmith1874

Agree it's like putting a light switch on and off , 1 minute boiling over and cold the next, lost count how many times the duvets on and off at night

stbernhard profile image
stbernhard

Many years ago, I was always cold. Freezing arms and hands. Some tests during an unrelated investigation showed that I had an under-active thyroid. Since then I've been on thyroxin and the feeling cold has disappeared fairy quickly. I hope you find a solution, being cold all the time is horrible. All the best.

Empress30 profile image
Empress30 in reply to stbernhard

I have thyroid disease too. The medication doesn't help. I wear a hoodie, socks and long pants in the summer in my house. Because I have the air on for everyone elce. I do like breathing cool air.

Wobblyone profile image
Wobblyone

As stbernhard says, it could well be your thyroid. Hypothyroidism is often a result of an auto-immune disease. Before mine was diagnosed I needed the heating on full blast in August! Ask your doctor to arrange a blood test for you.

BlackNov profile image
BlackNov

Before I was always the person that was too hot, but since I became unwell I am always very cold. My toes are usually completely numb with the cold. I find it is worse with the damp weather and after lying down. Unfortunately my only remedy is hot baths and thick socks in bed!

vivgibbs profile image
vivgibbs

yes me to have hot lower legs and burning feet wakes me up at night terrible also have a really cold one hand, worse thing at the mo is diverticulosis and episodes on the toilet. Had a recent dexa scan for bone density and showed up three white spots on my kidneys any ideas anyone

sickofra profile image
sickofra in reply to vivgibbs

Wow!!!! you sound just like me----never have a day/week without some weird thing going on in my body---spend a lot of time at various doctor's offices--very very sick of it!

Nsmith13 profile image
Nsmith13

Yes I've got under active thyroid as well so it's worth getting it checked hope you get what your wishing for good luck and let us know if you do 👍

Roxymagz profile image
Roxymagz

Yes im always cold. I practically live in a hot bath and have a electric blanket on my bed. X

Empress30 profile image
Empress30 in reply to Roxymagz

I have an electric blanket too! A must have.

kbspots profile image
kbspots

I suffer from extreme coldness also. It is probably a microvascular problem. Your iron level may be low and I know when I take it for extreme coldness I usually get warm within a few days. I have an electric heated mattress pad on my bed and I cannot live with out it. Does your skin look like a red lacy pattern.? If so it may be livedo reticularis which is common in the rheumatic diseases

lornaisobel profile image
lornaisobel

Im always cold and like you it hurts - hot very hot bath is good also i put my electric blanket on winter and summer - I have one of those bags you put in the microwave to heat up for when im sitting reading and of course hot water bottles b y the hundreds !! I find if I get cold I cant get warm without some help xx

Boobalou profile image
Boobalou

Yes.. I feel cold all the time.. I was just diagnosed last yr and Im to scared to take the medications.. My dr wants me to take Planqinel. I think thats how you spell it. The side effects sound horrible.. could cause you to go blind.. No thank you.. I also found out that I have Hashimotos within about 4 months of each other. That is a crazy AID that effects your thyroid.. attacks it .. so much fun.. Anyhow, they say that causes you to get cold.. thyroid regulates your body temperature. If I were you I would ask your dr to ck your thyroid levels.. make sure the dr cks for thyroid antibodies.. most drs don't.. Hopefully its something else..

sickofra profile image
sickofra in reply to Boobalou

Hi---I have been taking Plaquenil for 25 years. I need it first thing in am (with a little food). If I don't take it, I cannot lift a coffee cup. I take 200mgs morning and night. As far as worrying about your eyes, most doctors know this side effect and you will be tested once a year with your eye doctor for the "Plaquenil test". Please do not hesitate with this medication because of the side effect---I've been on it (along with other meds) for a very long time with no problem. PS I also have Hashimoto and take synthroid for that---diagnosed in the eighties!! RA really does a job on our bodies-----good luck!

Boobalou profile image
Boobalou in reply to sickofra

Thank you.. So with the meds do you feel better than without? Did you feel bad when you 1st started taking Plaquenil? Thanks for replying.. If you would like to connect on Facebook I would love to have a friend that is going thru what Im going thru.. It gets lonely and none of my family or friends understand what this does to our whole bodies.. Let me know and we can add each other on facebook..

Empress30 profile image
Empress30 in reply to Boobalou

I took plaqunil first and have tried about five more. That didn't work. I am now on methotrexate and Xeljanz. They have worked the best so far. I would rather be mostly out of pain than think I am going to have the side effects. They have to list them. Doesn't mean everyone gets them.

TTCC profile image
TTCC

When on steroids I’m a nuclear powered heater / sweat box (nice! Lol)

Off steroids I’m cold to the bones -to me my femurs feel like ice rods but my skin to touch can (but not always) feel normal temperature!

Magymay profile image
Magymay

Yes I'm always getting cold ,especially my feet and my back ,I've always got a hot water bottle at my back .I was never like this until a few years ago ,and currently on 20mgs MTX8injections weekly ,plagued with mouth sores and sore scalp spots .Stuck in and a bit miserable as I can't get dentures in ,😖 don't want to frighten everyone lol 😂😂😂😂the side effects are terrible ,I've also had costochondritis and bursitis which I think are quite common with these conditions ,how lucky we are 😞still have to take each day as it comes and thank god were still on this beautiful planet 😁😁

Empress30 profile image
Empress30

Yes I do. I thought it was my age. I just dress in layers. I need to in the summer with the air conditioning on too. I guess I don't move around as much as my husband does. I also use a electric blanket.

VeronicaF profile image
VeronicaF

I do too

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